Without the opportunity to empower themselves, hope for
the nation's handicapped will remain just a four-letter
word, says Ashwin Mahesh.

01 April 2003 -

Thirty three years ago, in the spring of 1970, my mother and father took their infant son to the Christian Medical College Hospital in Vellore, Tamilnadu, in the back of a beat-up Ambassador taxi that constantly threatened to go off the roads. Every once in a while it would lurch left and then right, I heard my aunt say later. On one of the many trips they made to Vellore from Madras, a wheel broke loose and ran off. And yet I know for a fact they never noticed these harrowing distractions for more than the time it took to fix them. Their child, all of eight months old, had poliomyelitis, and was paralysed.

There is no objective way to tell this story; it is my life, and everything about it is naturally coloured by having lived it. I know of no right way to talk publicly about my experience with polio, but this is a journey like many others, and it has to begin somewhere. I'm simply going to tell this story because the millions of others who suffer from polio, or any other major illness, don't always have the good fortune that I've had; to ensure that their needs might be seen, understood and addressed by the society from which they are so removed. This is for them.

I can only imagine how things would have been a few weeks after the fact, back in our home in Madras. Married after a long and much-applauded romance, Amma and Appa were certain that their firstborn son would be the culmination of everything they had dreamed about during their courtship. And yet, here it was, the certainty that for the rest of his life, he would live with the debilitating effects of an illness that defied description. I've lived with it and I understand it, and yet I sense that if it ever happened to a child of mine, I would probably go crazy. How much harder it must be for the healthy I cannot imagine.

The day-to-day needs of their crippled child must have been distressing enough to my parents; still, I imagine that their greatest sorrow was in seeing their hopes for his future dashed. Our sufferings are often a yearning for the things that appear to elude our future lives, more than mere regret at their current absence. I remember a day, more than two dozen years later, when my father told me that his greatest failing as a parent was that he had not ensured the health of his infant son. It couldn't have been his fault; I know that, and yet there is only so much I can say to assuage it. It is his personal tragedy, borne not of my finger of accusation but of his own measure of himself. It hurts me as much as it does him.

For I owe everything I have ever achieved to my parents, who refused to see in their son anything but the best they might have hoped for anyway, polio or not. Some years later, as I wondered how they ever learned to cope, I was struck by the marvelousness of it all. Marshalling every ounce of their strength, they shoved me through every conceivable therapeutic session that passed their vigil, and every doctor who offered some ray of hope. If it was up to them in any way at all, they would change the facts on the ground, and they set about it with a vengeance that only grieving parents can muster.

Incredibly, the tide turned. Slowly, and to their immense joy, I recovered the use of my legs and my neck muscles, and my left arm. But the right would never be the same again, the very best I could hope for is that would always be a supportive limb to the left, the rest was up to God, whatever one understood that entity to be at a time like this. Still, when you've been through a whirlpool, mere waves on the shore must seem like a gift, one my parents seized with all their energy.

The first rule of rehabilitation is always the same -- no excuses. My parents made that quite clear -- there was no polio in geometry, science or geography, and absolutely no reason why I shouldn't do well at those. The traditional moorings of the middle-class way of life no doubt reinforced this. Books were the obvious antidote to my physical limits, besides being the usual passports to prosperity. And they embraced this world with a vengeance.

I did well enough in school, but more importantly, I did everything anyone else ever did outside the classroom too. I played all the games, and I even learned to play them well. My therapeutic sessions continued alongside school, but no one was about to cut me any slack on the grades on account of that. Other kids did things in their spare time, didn't they? Why couldn't I? Somewhere in the back of my mind I knew the answer -- that I couldn't do some of those things not because my illness hindered doing them, but because I needed to feel like everyone else first. I never mustered the courage to say that.

Perhaps it was just as well that fourteen year-olds don't confront their sorrows and fears with poise. In my silence, I exercised when everyone else did, even if not in the same ways. I went swimming with my brother well into his days on the Karnataka state teams, and I learned to beat him occasionally at table tennis long after he'd won a whole bunch of those tournaments too. I learned to bike and row and throw and bat and everything else, alert to the terror of hurting myself doing these things, but trapped by the desire to do them anyway.

And somewhere on that journey, I began to see the adventure lurking beneath the difficulties, and to cherish the accomplishments, even if only wryly. At the same time, the grounding in education that I received as a child has created a world of its own. And within its confines, I note with satisfaction that people easily separate the accomplishments of the mind from the limitations of the body, so that the Ph.D. or the papers I write are not achieved in spite of my illness, but rather apart from them.

There isn't any way to say these things without appearing overly proud of them. As well I might be, for every once in a while, I am reminded of the alternative, of memories that last a lifetime from events that lasted but moments.

I've sat at dining tables and passed up half the food because I couldn't lift my arms to serve myself, while everyone else was too scared or embarrassed to ask. I remember falling from my bicycle and knowing as I fell that I wouldn't brace myself but merely add to a growing family of bruises and stitches. And every classroom full of right-handed desks is more than an inconvenience, it is a reminder that I am left-handed for a reason.
I've been stared at by more kids than you'll ever see, asked awkward questions that I didn't always know the answers to, and sympathised with by so many people it isn't worth remembering the count anymore. I've spent hundreds of my adolescent days wondering if I'd trade my entire life in for one day of being just like everyone else. All of this, over an illness that stands in front of me, presenting a facade to those who have never lived on this side of it.

The people I have known and loved have always gone beyond that, and that has been my good fortune. Behind the movements and behaviour that appear unfamiliar to many, the few still see a capability they always knew was possible. When I strap my cleats on and head out to the soccer games, my friends and family do not worry; they know I can hold my own with most of those on the field. When I go camping in the woods, I'm just another person chasing elk and mushrooms. Sure I have special needs, but mostly nobody's watching for them, and there is a comfort in that.

And that is why I tell you this story, for making it to the other side is a dream, which is not real to the vast majority of Indians who have polio, or any other major illness. A society where even the healthy are at risk of dying from malnutrition and neglect has little space for the ravaged. Coupled to this, illness itself is seen as a matter over which people might be shelved, and the majority of sufferers never see the full light of day in which their talents might be explored and their lives might be fulfilled. Even I, who live with my hardships, hardly ever meet others who do; I regret that, and I'm working on it.

Inevitably, I wonder if it is the experience of living with polio that has attuned me to the suffering of others. Whether, without my own life having been the way it has, I might still lift my eyes to those worlds. I don't know how I shall ever know the answer to that. For, in truth, to answer the question, it is necessary to first imagine a life where things might have been different. I'm already grappling with that.

The rays of hope for the stricken in our society hinge on the willingness of a few to stand themselves up to be examples in their name. The few who make it out of their binds have the obligation to speak for those who do not, and to make things easier for them. For debilitation and suffering are not badges one wears on a sleeve, so that the crumbs of pity that flow from them can make lives better. Instead, the subtracted state of our sick, homeless, poor and malnourished is a reality of their lives, one they bear with the kind of gumption and fortitude that you and I cannot even begin to imagine.

I'm handicapped, yes, but I've been enormously fortunate, and mercifully not too much the worse for it. Too many others are held back in countless
ways, not just by illness but by lack of opportunity, landlordism, enforced prostitution, social ostracism, and worse. The real challenge of our lives is to
empower them, so they can walk all those paths they only dream of now. Without that promise of a different life, hope is just a four-letter word.

Ashwin Mahesh

01 Apr 2003

Ashwin Mahesh is a co-founder and editor at India Together.
This article first appeared in 1999 in rediff.com, where he is a regular columnist.